And God Laughs
I told God my plans and He laughed. So now I am living, laughing, and loving according to His Plans.

My curly toes

6:26 AM

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My crooked little feet

4:34 PM

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Losses and Gains (Top Ten Lists)

12:17 PM
I decided that, ancient computer usage or not, I wanted to post this. It is a double top ten list that really helps me, at least, put into perspective that even though it feels like I have lost so much to this illness I have also gained so much as well. In the end, my life has never been an easy path but I would not go back and erase a single step because every obstacle and every victory has defined who I am. Not that I did not/do not have times when I think it absolutely sucks because Pollyanna would never last a day in real life, but in the end if anything were subtracted or added I would not be me. And this is me - Take Me as I Am :)

Top Ten Things Lost:
10. Dignity
9. Friendships
8. Security
7. Financial Stability (I owe more than I will make in a year)
6. Trust
5. Joys - Hiking, Exploring Historic areas and museums, Photography
4. Music- Last concert I was able to attend was when I was 18; extreme noise, extreme temperatures, flashing lights, crowds all trigger an autonomic crisis; even attending a movie at a movie theater has about 50/50 odds of triggering a crisis
3. My Beloved occupation as a special education teacher
2. The entire life I had created for myself
1. My independence

Top Ten Things Gained
10. Self Respect
9. Knowledge on how best to advocate for myself and to refuse to be bullied by a white coat
8. Vast self understanding and appreciation
7. The knowledge of what true friendship really is, and what a rare blessing it is to experience it
6. Discovering just how incredibly loved I truly am
5. Losing all fear - I am confident in who I am, willing to put it out there, and if I fail then I get back up and try again because I have that opportunity
4. New Joys- Before this I would never even attempt anything in the visual arts, now I love exploring and do not criticize because I am doing it for the experience (although my skill level somehow greatly increased after getting sick); audiobooks for days when I have little energy; an even greater appreciation of music
3. A renewed appreciation for living in the moment and gratitude for the miracle of being alive
2. Insight into the experiences of my kids and what is asked of them on a daily basis, and just how amazing they truly are
1. Renewed Faith

Now I may hold a spontaneous pity party tomorrow, but I can guarantee it will not last long (those things are poorly attended and get pretty lonely pretty quickly, plus the atmosphere at those is so dreary). In the end, my life is not in my hands - I did not write my genetic code, I did not form the parts of my brain that can not coordinate properly, no more than a healthy person programmed their own genetics or shaped healthy organs. I am just living with the gifts I am given, accepting the challenges (I love a good challenge, a good dare), and discovering amazing beauty along the detours of life.
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Warning: Slow Learner Ahead

11:56 AM
I joyfully thanked God for providing me with the opportunity to purchase Elphalba, my laptop, at an incredible price at an after Thanksgiving sale just before I would become sick beyond my imagination and all of the wonderful things I was able to do with her. I then told him my plans for using her. Will I ever learn? On Saturday evening, I shut Elphie down, and she was set in her usual sleeping place in the corner for the night. Sunday morning when I went to turn her on, God laughed. Ie green power button lighting up and the fan turning on were the two responses from Elphabla. The screen remained absolutely pitch black, and she did not make any of her usual computer sounds. I tried several home remedies, including removing the battery and reinstalling it, restarting any number of times, and letting her sit for a "time out". She is still dead. Thankfully the warranty is still good, so I have to take her in for repairs, but for the next 2 weeks or so I am without my laptop. I am using my mother's ancient computer. And by ancient I mean the monitor is Packard Bell and the tower has an original first production Intel processor. I could brew tea in the time it takes to change pages, and it likes to suddenly shut down without warning. Charming creature of early technology. My concern is that, like the slow learner I am, I had not yet transfered my files onto the brand new thumb drive I purchased for that exact purpose about two weeks ago. I would miss my photographs greatly, but I would be devestated if my writings (journals, poems, etc) were lost. I had also collected a large number of Bible verses and chapters that I had prepared to study regarding faith, suffering, trials, healing, and perseverence. I saved them all on my computer in a Journal format and I could never recall all of them on my own. Ugh! I can access some things from my cell phone, but not much. In the meantime I purchased a cheap portable DVD player so I can still curl up in bed when I don't feel well and watch DVDs (I am in love with the second season of Pushing Daisies which just came out on DVD), and I can listen to my audiobooks which tend to arrive in MP3 CD format (I usually transfer them from computer to iPod so I can listen). I know better than to pray for patience, but I really have got to learn to stop telling God what I am going to do and instead just follow Him in every single way. This lesson is hard for me, and it is getting to be expensive LOL

* When I say "And God Laughed" I simply mean God smiled at my humanity and my belief that I was in control like a Father smiles at a toddler proudly announcing "Me the boss", and then my life followed a different path - His path.
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Sweet Innocence

11:00 PM
My almost five year old niece visited today, and she is still a never-ending source of delight and enchantment and laughter and wisdom in my life. In so many ways she is eerily a miniature version of myself. As a toddler I nicknamed her Little Bit because she had far too much attitude for such a Little Bitty thing and the name still applies. In her innocent, wise, uninhibited child ways she sought to understand today what must be incomprehensible to her. And I treasure her faith in me, her honesty, and her inquisitiveness.

Little Bit: Why are you walking with that walker?
Me: Because my legs are not strong enough right now, so I need to use the walker to make sure I don't fall.
Little Bit (sitting next to me on the couch): Why do your toes point down like that?
Me: They are stuck like that for right now, sweetheart.
Little Bit: (wiggling her toes) Mine aren't stuck.
Me: That's right. But see, my toes don't move even if I pull on them.
Little Bit: How'd they get stuck?
Me: Well, I got sick and it made my muscles not work right.
Little Bit: How did getting sick make your toes stuck?
Me: Because of being sick my muscles don't work right. You have strong muscles, but my muscles in my legs and feet are not very strong and they get stuck.
Little Bit: Oh.

And with that, she hopped off the couch and proceeded to twirl into one of her frequent spontaneous dances. She can be as serious as an adult at one moment and then launch back into the joyful delights of being almost five. She has not yet learned to form stereotypes or prejudice, to fear difference or to not ask questions. She can entertain herself for an hour with nothing more than a willing audience and two flip-flops. God, I love this child!
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Learning to cook!

1:04 PM



My culinary skills have primarily consisted of the following: operating the microwave, stirring contents of a pre-packaged meal in a pot on the stove (i.e., macaroni and cheese, soup, cooking noodles, instant rice, etc.), scrambled eggs, grilled cheese, and dialing a telephone. I supplemented this with no-cook foods like salad, sandwiches, fresh fruit, and fresh vegetables and I survived through college and living on my own in Virginia. However, after having gone through an extended period of time when eating was basically impossible and I had the privilege of sampling the range of Gerber baby foods in Stages 1 and 2, I want to cook and savor foods. I also will never, ever again in my life eat mashed potatoes, macaroni and cheese (it made me so violently sick), applesauce, cream of anything soup, or anything pureed. I want to enjoy healthy meals and savor the tastes and foods I never thought I would be able to eat again when I was struggling to eat 1/4 cup of pureed mashed potatoes thinned with chicken broth. Thus, I have decided to learn to cook. My first successes unfortunately did not have the opportunity to pose for a photo-shoot. They were a sweet apple sauerkraut, an apple and beet salad, and sesame chicken. It all turned out delicious and there was no need for the fire extinguisher! Pictured above is last night's success, Italian Baked Tomatoes. They have a drizzle of olive oil, seasoned sea salt, oregano, pepper, garlic, and fresh grated Parmesan cheese. The garnish is Basil leaves (which is in the seasoned salt) for aroma and a touch of flavor. It was a wonderful meal, and easy to make!! It may take me longer than most other people, and I may have to make accommodations (like sitting down to do most of the cooking) but the results are just as amazing, if not more so for the extra effort! My next planned meal will be an eggplant and tomato augratin. Also, a huge bonus - I purchased all fresh ingredients for 6 meals this week for $80, which would have been $40 or less had I not needed to buy a stockpile of spices. It is even less expensive than the other meals!! Bonus! And I savor any new independence I can claim!!
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New Wheels

11:25 AM


This is a picture of what my new wheels will pretty much look like!! Yesterday was my appointment for my evaluation for a new wheelchair, and I am beyond excited for my new wheelchair! It will be an impatient 2-3 month waiting period as this chair, with all of its customizations and specifications designed just for me is going to be incredible. The change will be unbelievable, like going from a bicycle to a Mercedes-Benz. My current wheelchair has improper wheel position, which causes me to have to expend excess energy as well as soreness just to propel it, and I am fighting against both the wheels and the seat back with each push. New chair? Not a problem! The center of gravity will be properly aligned, with the wheels properly positioned, and the seat back designed so I do not have to struggle against it with each push. Custom gel cushion seating, custom cushioned back cushion, non tip removable wheelies, and custom leg rests that will actually help properly align my legs from hip to foot!! Tires that will not cause me to have to play damsel in distress in the snow this winter, and welded tie downs for safety on the bus. Oh, and the color rocks! It is a metallic purple plum color! Oh, and it weighs about half of this bulk of a monster I am using now!! If you want to see details, go to and click on the side links for things like color (plum craze), tires (the heavy duty tread at the top) and such. I am going to have a sporty, sexy, hell on wheels chair!
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One Slice of Life, Hold the Pity

10:39 AM
Perhaps it is a result of having literally grown up from infancy with significant medical issues, but one of the fastest ways to witness my honest redheaded German Irish temper is to pity me. I detest the word pity, I detest the connotations of the word pity, and I loathe being on the receiving end of it. To me "pity" is a direct message that my life and existence is clearly less than that of others, and for that someone feels great sorrow. Pity brings to mind images of helplessness, of brokenness, of one step below whatever "normal" is in society. I don't want pity any more than I want the Bubonic plague or head lice or the Swine-dog-bird flu hybrid. My life may have radically changed without anyone bothering to ask my permission, but that does not mean that I have changed. I have never defined my identity, my worth as a person, my value and meaning and purpose by my body. Who I am and what I am is so far beyond my body, my body is just a storage container and a tool. Sure, some people have containers that are less dinged up by life than mine, but are the contents the same? Have they learned just how precious each and every single moment of life truly is? Do they know the joy of celebrating the small things? Can they witness the world through the eyes of a child, full of wonder and amazement? Are they living in a world focused on materialism and "more", on things that do not matter, or a world that is clear on the things that truly have meaning in life - love, helping one another, relationships, memories, the moment, one another? Do they carry with them the education of three years of the world's wisest professors, of children the world sees as having disabilities but who have wisdom, joy, perseverance, determination, faith, hope, and resilience beyond measure? Can they say that they have lived their lives with no regrets?
I don't want to sound like I am a saint, because I am as flesh and blood human as anyone else. Just yesterday I had a moment of sarcastic bitterness that escaped. For twenty minutes I listened to a young woman loudly and proudly describe in vivid, and lewd, detail to her friends how she was actively destroying her life and taking her three year old daughter along for the ride. As she skipped off of the bus and walked away, I could not edit the comment that came out. "And SHE gets the legs that work?!?" I use sarcasm and humor to deal with situations, like people who stare or ask rude questions. I have run into people with my wheelchair because they walked directly in front of me, having made eye contact with me but deciding I could stop for them and I was not about to wear the skin off my hands for them (there is no ABS on my wheelchair, sorry. And the leather on my gloves is expensive too.). But I don't want pity, or anyone to feel bad for me. I do want understanding, knowledge, accessibility, awareness, and some good old fashioned manners. Heck, if a girl can dream I would love to have people stop thinking that handicapped parking spots are also designated for the lazy. But save the pity. My life may be different, it may be hard, but it is so worth every second and so much more than what you see in a body in a wheelchair.
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Six Degrees of Exhaustion

6:48 PM
Did you know that the concepts of tired and exhausted actually have multiple levels and degrees to them? That there is a complex and complicated system of quantifying these ideas for which the English vocabulary is seriously lacking? Well today, free of charge, I will offer the Cliffs Notes edition on degrees of exhaustion, or layers of tired (depending on if you want a pop culture reference, or a classic literature Dante reference).

1) Tired- you could continue what ever activity you are engaged in for a while longer, but it would be more comfortable to sit down and rest; with proper motivation you can find the energy to get up and going again

2) Drained- you are mentally tired as well as physically tired and are uncomfortable unless sitting or reclining

3) Sleepy- you are nearing the point of needing to sleep, and activities are becoming difficult

4) Groggy- it is time to sleep, your ability to focus and concentrate is gone and you are comical to observers as you are "sleepy drunk"; this is a great time for those not groggy to engage you in a conversation and laugh hysterically at your answers

5) Exhausted- you may or may not be sleepy/groggy but it is a physical effort to move your body; you debate whether or not you really need to go to the bathroom that badly because of the amount of energy required to get there and back; you ignore itches because scratching them is an effort

6) Beyond exhausted- sitting up requires vast amounts of energy which you do not have, and you discover that odd body parts like fingers and eyelashes suddenly weigh a lot; Activities that involve movement are a joke and you long to be just tired. You watch enough TV and DVDs to reach a point of detesting most programs, and you actually wear out an iPod from overuse listening to music and audiobooks. Sleep does not change this state, you fall asleep beyond exhausted and wake up the same way - sort of like a really warped version of ground hog day. And there is not enough Starbucks in the world to create the necessary energy.

My energy levels fluctuate between days last month when I wheeled myself 1 1/2 miles home from the store to more recently when I have been bouncing between exhausted and beyond exhausted. I keep telling God that I have too many things to do to be tired, and He keeps laughing and reminding me that this whole thing is out of my hands. Sometimes it is a little annoying, the whole "God is always right" thing! It makes debating and arguing in prayer a bit one sided and predictable. Not that it stops me or anything though! :) Today is totally my fault because yesterday I pushed myself far beyond the limitations of my body in order to prove a point to myself in cooking dinner. The cost benefit analysis at the time said it was worth it, and I still agree. Besides, I am too damn stubborn to play by the rules of this body. I am still the one in charge here, regardless of the coup it is trying to throw on the government. But for today I am curled up on my bed watching DVDs and pretending that it is because I am that into them instead of being at level 6. :) Denial is more than a river in Egypt!
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Randomenity

1:29 PM
Randomenity: noun, originating from the word random, the relocated prefix -en meaning "to be filled with" and the suffix -ity meaning "to be in a state of", not recognized as standard English but a word created by me to fill a void in the English language; generally applies to a collection of thoughts or concepts that are not well connected by theme, sequence, or structure; a set of short observations or notes in a blog entry that are seemingly unrelated and do not have a connecting theme or topic

I, who have previously existed by the art of microwaving, heating packaged foods, and dialing a telephone, successfully made two complete dishes from scratch last night. One was a beet and apple salad with a homemade dressing, and the other was an apple sweet sauerkraut. Today I am making sesame chicken, since yesterday I forgot to allow for the marinade soaking time. Hey, the fire extinguisher was not needed and the food turned out to be not only recognizable but edible and enjoyable!! Only bad part is that I, who used to add garlic to a garlic pasta sauce, can no longer tolerate garlic very well with my funky touchy stomach. The tiny amount of minced garlic in the salad dressing tormented me all night long. :(

Tomorrow afternoon I am meeting with the representative from the wheelchair company to go over all of the measurements and necessary specifications for my new wheelchair! I am excited because I know very well how long this process can take and I am desperate to have a wheelchair that does not increase my pain. We will be able to figure out seating that meets my needs not only in terms of my spinal issues but in terms of supporting my hips to keep them from rotating so much, and a better leg rest system. In one way it is difficult though, because until now the wheelchair has been rented, not permanently mine. So in my mind I could hold on to some illusion that I would not need it for long enough to have to purchase one. While I have realized over time that this is not improving, at least not in any direction that will allow me to walk for mobility anytime soon, this just makes that very real.

Another harsh reality check is the fact that truly wheelchair accessible housing is not easy to locate. Most places I have found are designated for senior citizens and individuals with disabilities, with preference going to senior citizens. Is it so much to ask to be able to rent an apartment? One where I can reach things and fit my chair in doorways?

My brain just went kaput. I think it is protesting the fact that I fell asleep, then woke up around 2 am and was up until close to 4 am, then woke back up at 9 am. I was going to write more, but now I have no idea what that more was. Go figure!
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Quote of the Week July 19-July 25 2009

9:37 PM
Courage, it would seem, is nothing less than the power to overcome danger, misfortune, fear, injustice, while continuing to affirm inwardly that life with all its sorrows is good; that everything is meaningful even if in a sense beyond our understanding; and that there is always tomorrow.

Dorothy Thompson
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Life (the fine print)

8:56 PM
Absolutely no warranty against defects, imperfections, damages in transit, or spontaneous malfunctions. Use of this product has been documented to result in significant pain, breakage of critical components, irreparable harm and death. Product is exceptionally fragile. There are no exemptions, no loop holes, and no returns. Models vary greatly, but once received exchanges are not allowed. Price is subject to change without notice, and is decided on an individual basis. Using this product while under the influence of intoxicating substances frequently results in humiliation, injury, incarceration, and death. No replacement parts or upgrades available. Limited battery time, after which the product ceases to function. Battery times vary. No expiration date is provided. Complaints may be registered, but currently waiting times exceed all battery viability. If you are reading this, your battery is already running and can not be paused or rewound. Consider this as you decide how to best use this product. All sales are final and for a limited time only. Full responsibility for use of this product resides with the owner.
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Translation Required

9:12 PM
Apparently I am getting old. Yes, at almost twenty-eight years of age (and still not consistently passing for twenty-one) I am now having to translate my normal speech for teenagers. I was wedged into a corner of the most inaccessible, cramped and crowded store at the mall where I was trading in games for my Nintendo DS when two tween boys began to enthusiastically play the display model of the Wii that was about two inches from my rear tire. I felt like I was ring side at a boxing match, only a little too ring side as I ducked and dodged the Wii-mote flailing about my head. Finally I had my trades in hand and attempted to maneuver out of the corner.
Me: "Excuse me, please"
Boys: glance at me, then return to playing
Me: "Excuse me, Please!"
Boys: do not even acknowledge my presence
Me: Translating into Teenage language "I will run you over if you don't move"
Boys: rapidly move aside and allow me to navigate through
Apparently something was lost when I spoke polite adult English that became perfectly clear when I brought it down to a simple statement of the facts. They may not understand manners, but they do understand cause and effect - you move, you keep your toes; you don't move, I give you a one of a kind pedicure free of charge. Just like I had to helpfully explain to the teenager behind me in line that I could not move away from the counter unless they backed up and gave me space because my wheelchair has yet to get all go-go-gadget and fly, and the only way out was backwards. Apparently in his quest to own that video game immediately, this logic had escaped him. I was patient and gave him time to figure it out before pointing out that he could pay for his game if he would move for just a moment so I could backup. It was like watching a moment of revelation as this logic processed through his brain. I then made my way to Target to pick up a prescription (which they screwed up - I pity the pharmacist on duty when I go back tomorrow; this anger stage of dealing isn't pretty but I have checked off all of the others) and buy a new charger for my iPod because the other one had a loose wire. I also happened to end up with a new skirt, short sleeve cardigan, tank top, and hat. Go figure!! That translates into I may be stuck in this wheelchair, but I am going to have style and demand that the world see me and not just the chair. :)
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Wordless Wednesday

1:06 PM

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Odds and Ends

8:37 AM
Yesterday was my first day back at physical therapy. This morning, I am remembering why I renamed it physical torture (at least at first). We did nothing really strenuous yesterday as the PT had to do a new evaluation to have a baseline for therapy so it was a lot of range of motion and stretching, and some walking with a walker. Yet this morning my legs and back hurt so badly that they had the audacity to wake me up at 6:30am because there was no comfortable position to lie in to sleep. So I had to get up and eat a decent breakfast before I could take pain medication, because taking that on an empty stomach is about the same as drinking a bottle of acid with a chaser of Ipecac syrup. Charming, I know. I had just managed to fall back to sleep in what has got to be the oddest contortion ever in the once-upon-a-time-recliner-but-now-just-a-chair and ottoman when my cell phone received the daily weather text message. Yes, I signed up for this service but they did not warn me that the text would arrive at 7am. Ugh! I was unable to recreate the odd contortion that had been so comfortable, so I surrendered and am awake for now. I joyfully have PT again today, which means that tomorrow my muscles will most likely establish rebel armies and stage guerrilla warfare against my body. Something tells me that they will not accept a peace offering of bananas either. :) Right now in physical therapy, since the neurologists are still working on a diagnosis, we are stuck doing pretty much the same things as before. Stretching, range of motion, maintaining strength, balance, loosening up tone as much as possible. The PT finally realized something I have known for months - when I am able to pull my foot upward (usually when under the impact of a medication), my toes pull significantly tighter. This indicates that after months of being "stuck" in their contorted positions, the ligaments in my ankles and feet have shrunk and so in order to pull my feet upward they have to contract my toes even more tightly. To which I say "duh!", this is one reason even attempting to try to stand or take a step with any approximation of a flat or neutral foot does not work - pull foot inward and up to that 90* angle and my toes are so tight they feel like the bones will snap. So I think we are going to work on stretching the tendons out as well. Sometimes I really wish I could do something textbook because PT would be so much easier if they knew what they were treating; the PT has told me that in her 30 years she has never seen anything quite like my symptom presentation. Why can't I be the horse whose hoof beats you hear instead of a zebra with a purple mohawk in a tutu wearing ballet slippers and dancing the dance of the sugarplum fairies? I know I am one of a kind, but it gets old after a while.
Good news, yesterday's preaching bus driver will not be an issue and I do not need to be concerned with him driving any of the buses that provide my transportation to/from PT or anywhere else. My final two comments on that incident (which really upset me, had me in tears, and left me feeling assaulted and violated) are "before you even try to touch a speck in someone else's eye you may want to check out the 2X4 in your own" and "Let he who is without sin cast the first stone".
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Nuts With Stones

4:01 PM
I am a Rebel Christian, although after today I am not so sure I like the connotations associated with the label. While using public transportation, I had the driver of the bus actually have the audacity to inform me that if only I prayed the right way and had enough faith I would be healed. At that instant, the entire notion of separation of Church and State flew past my head and right on out the window. Seeing as how my wheelchair is literally strapped to the floor of the bus, I could not leave even if I wanted to without his assistance. He continued to inform me that God will heal anyone if they bring to him the proper scriptures in the proper prayer and have sufficient faith. When asked how on earth that accounts for the death of children, whose faith is noted in the Bible as the most pure, I was informed that it was because no one prayed properly for them. Really? You mean the five year old little girl that I loved with all my heart who died two weeks after her fifth birthday my first year teaching died because her parents failed to say the right prayers? If all it took to heal someone was faith, why are so many parents on trial for the deaths of their children treated by faith and prayer who died because medical intervention was ignored? I was then informed that because I had no faith, I would not be healed, it would not work for me. As if my disability was a direct result of a flaw in my faith and my inability to properly pray. Faith is getting up each morning and continuing on this journey. Faith is trusting that there is a greater plan and purpose to all of this. Faith is not surrendering, not allowing myself to believe that God has caused this or abandoned me. Faith is putting one foot (or wheel) in front of the other when you have no idea what lies ahead but you trust that you will be guided and protected. That is faith, and that is a lot harder than lecturing and intimidating some stranger held as a captive audience. Faith is not throwing stones, it is not judging, it is not prejudiced, it is not hurtful. Earlier in the journey I also learned that apparently women are becoming to much like men, which is abhorrent to God, and that it is a woman's role to look pretty for a man. This man is a very good example of why I hesitate to announce myself as a Christian, and why I proudly state that I am a Rebel Christian. I can not stand the abundance of judgment and stone throwing, the hypocrisy and self righteousness that taints so much of the Christian church. This man condemned my faith and my spirit in the name of the same God I worship, and that is incomprehensible to me. He represents everything that causes people to turn from Christianity - lies, judgment, deceit, condemnation, hypocrisy, prejudice. He is a nut with stones to throw, nothing more and nothing less. But those stones still hurt, and leave you feeling somehow violated and assaulted. Does my wheelchair have to be a magnet for EVERY single crazy person in this damn town?!?
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9:45 AM
Trying out to see if texting from my phone really works, or if it needs to have some bugs exterminated. I am on the bus to PT and am anxious, and bored.
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My Professors Wore Pull Ups (Memory Monday)

11:10 AM
Student teaching is like an audition, a constant job evaluation, organized chaos, and being thrown into the deep end without a life jacket and learning to swim. At least that was my experience. I found out part way through my time in the classroom that my student teaching adviser had placed me in that classroom because the teachers were struggling to maintain any semblance of control and were on the edge of a three year old version of "Lord of the Flies". While I greatly appreciated her faith in me as a student to be able to make a difference and even help the real teacher figure things out, a little warning would have been appreciated. And combat gear. More on that aspect another time.
Little children can sense what I lovingly call "fresh meat", someone new to their environment who may or may not play by the same rules that the other adults in their environment enforce. I was "fresh meat" and every single child in that class smelled it the minute I walked in the door, and within the first three days of student teaching each and every one of them tested me individually to see where my boundaries were and if I actually followed through on consequences. That was like enduring 12 midterm exams that are not graded on a curve, they are pass or fail, while trying to dance a highly orchestrated ballet in tap shoes blind folded. Peabody College may have been looked down on by the Arts and Sciences students, with the phrase "those who can do, those who can't teach" often heard, but I dare them to survive a day in an inclusive preschool classroom.
My favorite test came from a very well mannered little girl with deep brown eyes and a tender heart overflowing with love. However, she still felt the need to see if I was serious or if I could be manipulated. We ate "family style" which meant that we corralled all 12 children at two tables and passed dishes of food (teacher's serving, we do have boundaries for hygiene) and shared a meal. I had finished setting the table with "help" from two other students and helped guide each child through the handwashing process. Jasmine was the only one left who had not washed her hands, and she was intently sitting in front of the computer playing some alphabet game. The following conversation occurred.

Me: "Jasmine, it is time for lunch. Come wash your hands and sit down at the table."
Jasmine: "No, I am on the computer."
Me:"Computer time is over. It is time for lunch. Wash your hands please."
Jasmine: "No, I don't want to."
Me: "Your choice is to wash your hands by yourself, or I can help you. It is lunch time. What is your choice?"
Jasmine: "To play the computer."
Me: [I walk over to the computer and pull the power cord out of the wall, ending all computer games] "Computer time is over. So can you wash your hands by yourself or do you need help?"
Jasmine: [Her eyes grow huge at the fact that I calmly reached behind the computer and actually unplugged it from the wall. She was expecting a back and forth exchange of turning it on and off with the power button.] "Uh, um..."
Me: "Thank you for making the right choice. When you are done washing your hands, please sit down with your friends so we can have lunch.
Jasmine: "Okay."
Me: "Thanks Jazzy! We would have really missed you at our table!!"

I passed the test, and she never challenged me again. Now the number of thoughts firing through my brain during this exchange, which lasted at most 2 minutes (with time for her to make her choices), was astronomical. My poor brain was firing thoughts so rapidly that it began to fire protests back, basically random jolts of "you are in over your head" and "ouch, thinking hurts!". Jasmine was the first child to out and out test me, and so I was nervous - it was a test not just to earn her trust, but a test of much greater importance. If I failed, if I could not enforce a behavior in a three year old, then I was in for a very long, hard learning curve. Passing that test was the first hurdle, and it was the reassurance that I could do this. Thank God I did not have a crystal ball or I may have fled that room and never returned. :)
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Theme Park?

10:54 AM
While I greatly admire writers who are able to follow a "theme of the day" style of writing, I am generally lucky if I can remember what day it is anymore. However, I do want to integrate a couple recurring themes to my writing that extend beyond the constant medical issues I am dealing with now, for I am so much bigger than my body. Tentatively (meaning if I can keep track of the days of the week and nothing major happens to interfere) I want to try to have "Monday Memories" in which I share the amazing stories of the children that I had the honor to teach and be taught by over the course of 5 years as a college student and 3 years as a special education teacher. I attended Vanderbilt University, where I had the privilege to learn from some of the greatest experts in the fields of every branch of special education. Yet my wisest, most life changing professors were my students. I may have been their teacher, but they in turn were mine and I am forever changed by having known each and every one of them. My wisest professors indeed wore pull ups.
I also want to try to do a "Wordless Wednesday" with photography, but since I am currently relying upon dial up internet (do not even get me started on that, it is like comparing the 1980s car phone with an iPhone) I have no idea how nicely my computer will play. Beyond that, I may expand to themes, I may just continue to write as my life bounces along this wild path, or experiment with different styles. In my heart I am a writer, I have always communicated my emotions and experiences best in writing and throughout my belongings (half of which are still in Virginia - rather annoying) I have over two dozen journals, piles of paper with poems and assorted writings on them, CDs of writing, and odds and ends. Not to mention in my Childhood Memory Box I have journals and writings from when I was little. In high school I once wrote a paper defending cannibalism because we had to write an argumentative paper for or against an "-ism" but were told we could not do something easy "like cannibalism unless you support it". No one else in my class was willing to risk trying to write an argumentative paper supporting cannibalism, but I thought it sounded like an awesome chance to try writing like Jonathan Swift's essay using sarcasm suggesting eating the infants of Ireland to end the famine. I took up the challenge and wrote an awesome paper (great grade too), but the teacher kept it. I wish I had that paper. I also earned a lot of respect from my classmates and friends, although I think they were a little creeped out about being alone with me in a car on snowy Michigan nights for a while. :) Donner, party of 2?
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Babbling on a Saturday Morning

11:33 AM
Recently I have purchased several TV series seasons on DVD because 1) there is never anything decent on TV when I have a "turn" to change it from HGTV (my mother is addicted - is there HGTV addicts anonymous? A 12 step program? Detox? Anything???) and 2) the couch is about as comfortable as a park bench, so with DVDs I can curl up in bed and watch them. My choices, however, seem to show that I am a freak obsessed with things forbidden to most Christians...that I am being lured to the "dark side" where Darth Vader awaits me. My DVD movies I bought include a two disc special edition of The Nightmare before Christmas, which I immediately snatched up because last year my incredible friend and I spent weeks trying to find a copy of it so she could educate me on the magic of Tim Burton, The Boy in the Striped Pajamas, which I know is heartbreaking but is a story that is powerful and needs to be told to new generations, and I still love my copy of RENT live on Broadway. MY TV on DVD selections are TrueBlood, which I am savoring and eagerly awaiting season 2, Ghost Hunters Season 4 Part 2, Paranormal State Season 1, Emergency Season Two (old, old show about paramedics that I used to watch in reruns with my mom and that is hysterical from the current technology), and Pushing Up Daisies. Somewhere I also have the final season of Gilmore Girls on DVD that I bought over a year ago. I have always admitted to having a wicked dark sense of humor and A willingness to view the world from different perspectives and avoid judgment. Besides, another four hours of watching people debate over which shade of white (off white, antique white, true white, dusty white) paint to use or how many throw pillows is too many is far more dangerous to my psyche than some hot vampires and ghost busting!! My weekend plans - vampires, ghosts, dead people brought back to life, old TV shows, sketching, working on an impossible puzzle, reading one of the 10 books I now have scattered around the house, writing a few letters I really need to write, and enjoying the relief I seem to be getting from the newest medicine cocktail. Whoever said diamonds were a girls best friend obviously never dealt with muscles in revolt, because screw diamonds Valium, Klonopin, and pain meds are my best friends right now. I went an entire day without one of the "jerking my knee violently up and smashing it into my face" spasms yesterday, and just when my legs started to really hurt and contract again, I had just taken the Klonopin and pain med. Maybe, just maybe we have a system of meds that will offer some relief?!?! I was wondering how I could explain the inevitable bruises from my knee slamming into my face, or my joints swelling from dislocating from the severe contractions. Is it domestic violence if your body beats you up?
I realize that this journal has contained a lot about my medical situation right now, and that is not the defining feature of who I am as a person. However, at this point in my life it is a huge obstacle that I am having to adjust to and deal with on a daily basis. Keeping a record not only helps me share information with friends and family, and express my emotions, but it also helps me keep straight all of the different things going on. I am still very much my quick witted, sarcastic, take life as it comes, independent to a fault, love to laugh, passionate, dedicated, dreaming, always learning Bethany that I have always been. The obstacles in my way have just changed temporarily. Instead of being up to my elbows in diapers and laughing as my students proved to me over and over that I was truly the student and they the teacher, I am up to my elbows in a medical quagmire and I am laughing as God is proving to me over and over that I am not in control and never have been. I am not a fan of that lesson, and we debate this often - but I lose, and he laughs at my silly willfulness. Hey, He designed me this way, attitude and all. I even occasionally debate with him the concepts of justice and fairness. He lets me yell all I want before gently reminding me that earthly justice is not the same as heavenly justice, and that life comes with no money back guarantees or warranty. That in a broken world, no one is spared. And he laughs gently when I admit that I know this but it still just sucks.
This post probably makes little sense, as it is just unedited free writing as I am curled up on my bed with a dish of frozen cherries (one of my favorite treats on earth!) and an assortment of my DVDs and books. It is real, it is straight from the heart, and it is my life. And it is well, it is well with my soul.
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My Broom is Parked Out Back

1:48 PM
So in small print on the medical information for the Keppra that I have been diligently consuming twice a day for a week now, there is a mention that it has the potential to cause extreme mood swings. Thank God, I can cancel the exorcism I had scheduled for Sunday evening! That info needs to be printed in size 16 font on the medication bottle, only worded differently: "Medication will likely create a raging bi*$% who makes PMS look like a delightful evening of family fun". I fully admit to having the temper that matches my naturally red hair, but it rarely shows itself except in direction towards mechanical equipment (my car is named Belle or useless piece of SH*% depending on how it behaves, for example). This week? My poor mom has been ducking and dodging sarcasm bombs and walking through a mine field every time she came within 10 feet of me. I thought it was a combination of my sleep schedule being messed up, increased pain, and total frustration. Then I read the fine print and learned that for Keppra, I am actually rather charming! I have not acted aggressively or attempted to harm myself, which apparently earns me bonus points. And doesn't it make perfect sense for a medication used to treat neurological conditions to screw with your ability to cope? Since I still have a full morning dose in my system, I am taking my broomstick to the mall to pick up my new medications and may the Lord protect anyone who accidentally triggers one of those mines!
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New Cocktail

12:20 PM
So after finally playing countless rounds of telephone tag with Dr. CH via her nurse/receptionist the plan for now is an entirely new cocktail of medications. First of all there will be no more Keppra and no Baclofen. The Keppra is causing constant nausea and some wicked mood swings, and has not caused any noticeable improvement so it is discontinued and any idea to resume the Baclofen was quickly killed when I recited my blood pressure from the 3 hour ER tour. Instead I will be taking Valium twice a day (morning, afternoon) and then increasing my evening dose of Klonopin. I will also have a different pain medication that I can take 3 times a day as needed, one that does not include ibuprofen which is both a documented sensitivity (it kills my stomach lining) and forbidden with blood thinners. Finally, the suggested tonic water - which contains quinine which can cause autonomic issues and blood clotting issues- is vetoed but I am under orders to do my best to increase fluids. As a result of the dysautonomia I never truly feel thirsty, so trying to remember to consume liquids is a struggle. We will reevaluate this new cocktail as needed. And this is in addition to the other medications that I take for other symptoms besides the muscle contractions and spasms and pain. Some people put money into a 401K, I put money into monthly RXs. :) But I am such a cute little redheaded lab rat!!
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Swing Batter Batter..And Strike!

10:41 AM
For the past few days I have been having increasing pain in my muscles, especially in my legs. The Keppra has done nothing to help, and has been a hindrance by increasing my already annoying nausea to an almost constant level. After ending up in tears and a tightly curled ball of agony one too many times, I called my neurologist this morning. And for the past hour I have been playing telephone tag with her through her nurse/receptionist/gatekeeper. This is the mighty Dr.CH, but apparently even the mighty Dr. CH may strike out. Strike one: telling me to take half of a baclofen at night. Um, Hell no! Baclofen is what bought me a three hour tour of the ER with a record setting low blood pressure that made consciousness an extreme effort. I don't particularly care if Baclofen is the cure, I am not going down that road again. Strike two: suggesting that drinking large amounts of Tonic Water would be beneficial. Okay, first of all due to the dysautonomia I rarely if ever feel thirst. Drinking any liquids is a struggle, and I am constantly on the edge of dehydration. Nasty tonic water has the same chances of being consumed as muddy river water. Second, tonic water has quinine. Quinine is documented to impact the autonomic nervous system as well as to impact blood clotting levels (lupus anticoagulant is actually listed as a side effect!). This seems like a duh! to me but putting the girl with lupus anticoagulant on high amounts of a drink with a medicine that can cause lupus anticoagulant (not to mention jack with her already temperamental nervous system) may just be asking for trouble. Strike Three came in writing for a prescription with Ibuprofen in it. Ibuprofen is an NSAID, which as a central characteristic is known to thin blood. All NSAIDS are forbidden to me because they can cause my blood to thin more than is appropriate since I am on blood thinners, especially since I still have the acquired factor deficiencies. Not to mention, I have NSAIDS listed on my allergies and sensitivities as causing severe stomach issues. And people wonder why I am so adamant about learning everything possible about my health conditions and medications and treatment?!?! Dr.CH is an incredible doctor, but without my chart in front of her (she is at the hospital on rounds, my chart is at their office) she is at a disadvantage. Her receptionist/nurse must think I am the most paranoid and obnoxious patient ever, but I would prefer to be obnoxious in her eyes than take another tour of the ER or continue to have these horrendous painful spasms. I fully admit that I am a complex and complicated patient, that I am frequently the most challenging patient a doctor will ever encounter and that providing care for me requires a high level of diligence and attention. However, I also know that anything less can result in disaster, and this is my life. So whether or not a nurse thinks I am a royal pain in the arse or not, I would rather cause her to do more work than just accept whatever I am told only to later discover that my ignorant faith came with a heavy price. But it does become extremely tiring constantly having to be alert, on guard, and educated - and unafraid to piss someone off in a very nice way by questioning the appropriateness of what is being done. This morning, Mighty Casey...Mighty CH has struck out. :( Luckily, I believe in second chances, and there are 9 innings in a baseball game!!
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And You Do This For a Living?

11:23 AM
I actually made the effort to answer my cell phone for a telephone number I did not recognize this morning, which happens about once in a blue moon. I am glad that I did because it was the medical supply company where I placed the order for my wheelchair on Monday. Note- order placed on Monday, today is Thursday. Apparently they just now realized that the type of wheelchair that the physician ordered for me is a customized wheelchair that requires, well, customization. Therefore they are going to have someone from their specialty office contact me regarding my exact needs and arrange to come out to the house for measurements and such. Also, they may need further paperwork from my physician to convince the insurance to pay for the wheelchair. Why not, by now my medical paperwork has cleared an entire forest for the paper it is printed on. Besides, I am pretty sure that spastic paraparesis, dysautonomia, dystonia, ataxia, and occult spina bifida (resulting in skin breakdown from the pressure of sitting in my current wheelchair) are going to be sufficient diagnoses to qualify me for whatever fancy wheelchair he ordered and I select. I am just a bit surprised that it took three days for them to recognize that this was not an off the shelf wheelchair order (hey, I have never ordered a wheelchair before, I thought it would be custom but then they said it was standard so I went with it) and would need to be a custom order. After all, they do this on a daily basis. I am excited that I will be able to make decisions regarding things like color, seating, positioning, and support. For color, I know that I want something bright and vibrant. Purple and red and orange keep coming to mind. Of course, there will be customization once I receive the wheelchair as well. :) Can I find a bumpersticker that says "I don't brake"? Or better yet "Beware of attitude". So sometime in the next few days I should receive a call from the specialty office to begin the process of arranging the custom order.
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A Date with a Vampire

4:01 PM
So my vampire was not a sexy man, transformed at the peak of his youth into a specimen of otherworldly beauty and power. And my vampire could not have protected me from anything more dangerous than a mosquito. But she certainly was thirsty, and she had no difficulty draining me of a decent amount of my blood. I rolled into her laboratory, all innocent with my little order slip from the doctor on my lap, and suddenly she gets this glint in her eyes. She rushes off to the back room, where I hear her shuffling through textbooks and calling a vampire reference laboratory to determine the accurate method of blood draining required for the most obscure tests. Then she returns to the room with an evil little smile, and I begin to wonder whether or not this is such a good idea. One by one the vessels for my blood are lined up and I begin to count them. 1, 2, 3, ...12, 13, 14, 15. Ugh! She must be thirsty, we are tying my all time record of vampire blood draining and going for 15 tubes of blood at once. I must give her credit, her aim with the "bite" was impeccable and in just one attempt a solid vein was tapped. And then the harvesting began. I swear I saw her licking her lips as she changed out the tubes, watching them fill with my deep red blood. Finally, about 5 minutes later and a pint lighter I had met the required quota and was patched up with gauze and tape. As she juggled enough of my blood to feed a nest of vampires, I headed for the door before anyone got any ideas for "extra" tubes or "dropped vials". Besides, it is a little creepy watching someone carry around an armful of your blood, even if they are a vampire. My next date better arrange for alternate dining, because I am not a living catering service and besides, it is going to take a bit for me to recoup that donation. :) Based upon the absolute rarity of most of the tests, and the fact that the vials have to be sent out to vampires at multiple testing sites (including U of M and potentially the Mayo Clinic), I do not expect to hear back regarding the findings or vintage of my blood for a week or two. Bon Appetite!
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You Know You Are A Medical Freak of Nature When...

3:58 PM
When the ER doctor admits he has no clue what to do with you and so will be going with the standby treatment of fluids, monitoring, and time

When you have multiple doctors in the same specialty (three neurologists, two cardiologists, etc.)

When the pharmacist asks you about the side effects and interactions of your medications

When the pharmacy knows you by voice on the phone and greets you by name when you pick up medicine

When your cell phone contacts have more medical numbers than friends and family

When you have to spell the name of your medical condition and explain it to highly qualified medical professionals

When you carry a notebook with a separate page listing allergies, medical conditions, and current medications because you are tired of writing it out at every office visit and trying to keep it all straight is a feat of mental Olympics

When the phlebotomist needs to sit down when drawing your blood because she starts to feel woozy

When you can take a handful of pills without a problem but choke on a chewable Flintstone's vitamin

When you know how to shower with an IV in your arm, oxygen tubing in your nose, and the inability to stand independently…and look forward to this as a semblance of normalcy

When you realize that crimping the IV line to set of the alarm works a lot faster than pushing the nurse call button, and you use this to your advantage when you have waited over 45 minutes for anti-nausea medication or to be allowed to go to the bathroom

When you can identify by taste more than 6 different intravenous medications (yes, you can taste IV medications - vitamins and Heparin flushes taste particularly nasty)

When you have no problem calling out a doctor and informing them that MD does not equate to Medical Deity

When you can keep track of the pecking order of physicians and have will keep them in line by reminding those with "just out of school egos" that they are still practicing with training wheels

When you do not hesitate to inform a nurse that he needs to get his butt back out in the hallway to wash his hands, then put on gloves before administering anything into your IV - and then discuss protocol with his supervisor

When the phlebotomist spends 20 minutes researching the lab tests that the doctor has ordered and calls their reference lab more than twice to determine what vials and processing are required as they have never run these tests before

When you can not watch medical dramas on TV because you critique their many errors (on Bones, when Booth was in the hospital, his vital signs on the monitor never moved…ECG tracings continually move, numbers fluctuate…very annoying)

When you prefer to self administer any injections, and nurses have commented on your technique

When the first question you ask a new doctor is "what exactly is your experience with individuals with complex, complicated, and rare medical histories?" and they must pass your interview before making "the team"

When the cost of your prescription medications alone each year is more than the average income of most middle class families (and you thank God for providing insurance coverage in any form because without insurance you would not exist)

When you can spell words like pandysautonomia and lupus anticoagulant and antiphospholipid syndrome without hesitation, but you misspell words like perseverance and righteous

When you know how many different objects can be made out of an inflated medical glove, a sharpie, and some paperclips

When you have perfected your aim at shooting the caps off of syringes and using syringes as water guns

When your blood pressure drops to 78/40 and you actually debate whether or not to go to the emergency room

When you can sit and write a list like this in under 5 minutes, and it is actually amusing
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Hood Ornament

7:03 PM
Top Ten Ways to End Up My Hood-Ornament

10. Yell when you talk to me (because apparently since I am sitting down instead of standing, I am also hearing impaired)
9. Ask me what grade I am in or when school starts again (because I am almost 28 years old and would love to securely pass for 18)
8. Tell me how well I "drive" my wheelchair ("thanks, you steer those sneakers pretty well too!")
7. Let your ignorance show ("what's wrong with your legs?" - nothing, what's wrong with your manners? or "why do your feet point in all pigeon toed?" - I'm a ballerina.)
6. Create a business that is not accessible due to stairs, aisles that are too narrow, inaccessible bathrooms, or products that are placed too high (I would rather take my business elsewhere than have to repeatedly play damsel in distress, it gets old quickly)
5. Assume that I have cognitive impairments and speak to me as if speaking to a three year old ("Someone is buying new shoes today!" Yes, and someone is going to put one of them up your arse lady! My IQ did not suddenly drop when I sat down in the wheelchair...there is no magic force of the seated position that destroys cognition. Besides, you work at Walmart, get over yourself! )
4. Help me without asking my permission (Pushing my wheelchair without asking me is like someone suddenly picking you up and carrying you - they may have the best of intentions but unless they are damn sexy, you would prefer to keep your own feet on the ground and remain in control)
3. Park in a handicapped parking spot when you have no legitimate need (Ignorance and Laziness are not disabilities, even though they are really annoying)
2. Stop and stare at me as if I have managed to escape from a circus sideshow (Really, have you never seen anyone in a wheelchair before? If not, you need to get out more! And if you have, they all work on the same principle, and like it or not us "damaged folk" are going to continue to use our rights, so suck it up and deal)
1. Walk or stand in front of me and refuse to move (I love playing bowling ball, and I have earned several strikes already)
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One Answer, a Thousand Questions

10:52 AM
Yesterday was my appointment with Dr. A (who, now that I have seen his name in writing should be Dr.E but I am too lazy right now to change that) for an evaluation to obtain his expert insights into the movement disorder aspects of the mystery that has become my life. Once again I am incredibly thankful for a doctor who does not believe that MD represents Medical Deity and who realizes that, as the person trapped inside this body, I have a valuable perspective. He had me perform the wide range of neurological party tricks, most of which I suck at (note to self - if I ever drive again and am stopped for suspicion of drunk driving, I am totally screwed). That whole pointer finger to the nose thing looks so easy until I try to do it without my arm muscles shaking. And it sounds so simple to hold my leg up and not let him push it down, until with two fingers he slams my leg down over and over. Talk about ego bruising...a year ago I was able to pick up, carry, position and provide support for children with severe disabilities who weighted up to or even more than 50lbs.
So after his evaluation, he discussed his findings with me. Dr. A is certain that this is not a primary movement disorder like a primary dystonia or parkinsons. He is also certain that it is complex, complicated, and rare. His words "were you to present to us without any medical history and just your current symptoms, this would be a very complicated and difficult case. When you add in your history and the dysautonomia...". I saved him at this point and explained "I never seem to do anything simple. It is always rare, complicated, and an extreme challenge. Apparently it is against my genetic capabilities to follow a simple textbook anything." He laughed, but also agreed. So now that we know what it isn't, we are left with more questions. His opinion is that it is most likely something impacting my spinal cord given the presentation with my lower extremities, and he is concerned because I do indeed have increasing spasticity and tone in my upper back/shoulders which means that it is worsening. He mentioned a disorder called "stiff person syndrome" that they will be checking for by blood work, and also said he is concerned that the autoimmune disorder I was diagnosed with at 11 (and that has been greatly debated since then) could be attacking my spinal cord. He wants me to have a spinal tap, which is tricky given the fact that I am on blood thinners but actually better to do with me on the injections of lovenox than if I were taking coumadin. I have had a spinal tap before, about 9 years ago, and based on that horrid experience in which they missed and then ended up twisting the needle and as a result of their errors I ended up bleeding into the base of my spine I am going to agree only upon the condition of being unconscious. I can deal with the pain, but I find that adding unnecessary pain to an already painful life is unnecessary. Dr. A is now going to be a part of my neurology team, with Dr.CH as lead neurologist and Dr. SN as consult.
One huge success from yesterday was that I received an order for a new wheelchair. The one I have been using is a rent-a-chair that has horrible positioning and actually causes severe pain if I use it for more than an hour or two at a time. Part of this is because of my hip positioning in it, but mostly it is because I have occult spina bifida (the bones at the base of my spine are malformed) and the defect is a boney protrusion just below the layer of skin that receives pressure whenever I sit upright. I have not developed an actual open sore, but I have developed inflammation and scabs on this area from sitting. And as a result of the spina bifida, I have significant arthritis in my lower spine which also makes sitting on a poorly supported and cushioned surface painful. So yesterday after my appointment I went to the medical supply store and ordered a lightweight tilt in space manual wheelchair that could be here as early as Friday :) I had to call and have the Dr. fax them with detailed information regarding seating and/or cushions for seating but it should be taken care of as I have not received a call otherwise. New wheels!!! But to be completely honest, it was hard to order the wheelchair because as long as I was using a rented chair it left me with the illusion that I was only using it on a very temporary basis. Now that a wheelchair has been ordered and purchased for my personal use, it feels almost like surrendering a battle to this and admitting that no one things I am going to walk again any time soon if ever. That is hard, and it hurts. I am not giving up, but sometimes being hit in the face with reality is rough. So instead, I am going to figure out a way to make my new chair absolutely awesome - pimp my wheelchair anyone? :)
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Life is Magic

10:42 AM
Quote of the week July 6-July 12 2009

"You think that its not magic that keeps you alive? Just because you understand the mechanics of how something works does not make it any less of a miracle. Which is just another word for magic. We're all kept alive by magic... My magic is just a little different than yours, that's all."

HBO Series TrueBlood Season 1 Episode 3
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My village

5:41 PM
If it takes a village to raise a child, then it certainly takes a village (or a city) to keep me going. So I am going to run through the main players in my medical community, the role they play, and maybe even their batting averages! :)

Dr. CH: Primary neurologist, amazing doctor who has taken the time to call me after office hours to check on me and reassure me that they are working hard to try to figure this puzzle out, correctly diagnosed the dystonia

Dr. SN: Neurologist, works in the same practice as Dr. CH, specializes in neuromuscular disorders and genetic causes of neurological disorders, performed my EMG that showed nerve irregularities and is assisting in trying to identify the potential underlying genetic condition

Dr.A: Neurologist, another coworker of Dr. CH, specializes in movement disorders like dystonia, will be evaluating me tomorrow and offering his expertise and opinion to the process of diagnosis

Dr. C: Hematologist, perhaps one of the greatest doctors alive, I trust him implicitly with my life, both brilliant and compassionate, treats the blood clotting disorder (Lupus anticoagulant)

Dr. S: Sleep Medicine Doctor, also a very brilliant doctor, aware of the latest research, treats the narcolepsy/idiopathic CNS Hypersomnolence (my brain's inability to independently regulate the sleep wake cycle in anything like a normal fashion)

Pharmacists: They know me from my voice on the telephone or by a quick glance and go out of their way to be helpful, I think I probably constitute a good percentage of their monthly business :) I have finally found a pharmacy that is careful, helpful, prompt, and dedicated - key factors when you basically stock a miniature pharmacy at home

Currently missing from the line up but soon to be added are an internal medicine doctor, a cardiologist, a rheumatologist, perhaps an endocrinologist and psychiatrist (I fully admit to having dealt with depression as my life suddenly came to a halt, and I am not ashamed of this. In fact, the one question I have been asked by those in the mental health field most often since then was not why did I suffer depression but how did I manage to go 27 years without needing help prior to then :) the stigma is so dangerous because it keeps people from asking for help, sometimes until it is too late), and physical and occupational therapists.

By now I think some of my doctors have nice new cars courtesy of my insurance company and myself, and after the $40,000+ stay at GWUH in December, I think I paid someone's year of tuition in med school. :)

Also critical to my village are my friends and family who see beyond the superficial crap, beyond the wheelchair and the physical body and still see me for the person that I am. The people who love me, who make me laugh, who remind me on my bad days that it is normal to be angry/scared/frustrated but that I always "suck it up and deal" in the end because I love living too much, who believe in me. My parents, my family, my friends, my prince charming. They are better than any doctor or medicine, and they are my strength.
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I am Unique, Just like You!

4:51 PM
Yesterday at the mall I had the opportunity to practice my favorite new sport - wheelchair bowling. Basically, this consists of me serving as the rolling bowling ball and individuals who are too ignorant or rude to realize that walking directly into my path is a bad idea serving as pins. Small children and the elderly do not count. I figure I am not wasting the skin on my hands that is required to try to suddenly stop my chair, even with gloves on, because someone is too ignorant to realize that I have the right to be there and might not be able to stop within a 2 second time frame so they can walk in my path. Also, I say "excuse me" once, and then I figure if I know you heard me you must want to be a bowling pin. :) So yesterday I was cruising at a good speed down the hallway of the mall, trying to make it to the exit where the bus stop is in time to catch the bus. A group of teenage wanna-be punks decided that it would be a great idea to meander directly in front of me and then just kind of slow to a stop in the intersection. These kinds of teenagers greatly amuse me because if you speak with them they will insist that with their torn, baggy jeans and black nail polish and spiked hair and converse high tops they are rebelling and being a completely unique individual. However, each of their friends also happens to be rebelling and being completely unique in just the exact same fashion. this coincidence escapes them. It also escapes them that if they were really being successful at being unique and individualistic there would not be stores that catered to them because there would be no "them". I love the mentality "I am being an individual and I am being unique, just like all of my friends!". So anyway, a group of these punk clones was directly in my path and I was going slightly over what is probably considered the speed limit. I swerved and did make an effort to slow down, but I also felt the need to educate them in the ways of the world. So as I narrowly missed several sets of converse high tops and pale legs sticking out from ultra baggy shorts, I announced "This thing does not come equipped with brakes. It is pretty stupid to walk right in front of me and not expect to get hit!" Most of the clones - sorry, unique individuals, were absorbed in their conversation regarding some musician but one of them who just missed losing a few toes heard me and began to laugh hysterically. As I wheeled away, I heard him calling out to his minions, um one of a kind friends, "Hey guys! Did you hear her?!?" So they may be unique punk wanna be clones, but hopefully they are slightly more educated and less likely to cause a wheelchair crash clones. I am Hell on Wheels, Educating the World one group of Bowling Pins at a Time!! :)
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Three views, Three Laughs

5:40 PM
He waved his pudgy little hand at me and squealed in delight from the confines of the child seat in the front of the shopping basket. While his mother was preoccupied with selecting between cold medications, he carried on an enchanted "conversation" with me through waving and cooing and his brilliant brown eyes. In his eyes, I was a marvelous wonder of a "big person" conveniently seated at his eye level for the exact purpose of engaging in tales of the world as he experiences it. When his mother finally threw her selected medication into the cart and made her way out of the aisle, she never even noticed me even though her son continued to call and wave and bounce in his seat until they rounded the end of the aisle.
She peered at me with the appraisal of a child who is processing something new and trying to figure out how to make it fit into her knowledge of the world. As we waited for the elevator, she alternated between fidgeting with her toy cell phone and sneaking looks in my direction. To her five year old mind, I was a new encounter and she was fascinated but also trying so very hard to avoid being rude. I can only guess, but I would suspect that her past experiences with individuals who use wheelchairs has been limited to either medical environments (i.e. hospitals) or to much older individuals and at a very young looking 27 years old navigating the world independently I defied all known rules. I met her glance with a warm smile, and she shared her shy smile with me. I had to laugh as she repeatedly looked at me, in my wheelchair, and then a group of elderly individuals, some of whom were also in wheelchairs, as if playing the old Sesame Street game "one of these things is not like the other".
They stood before me blatantly staring at me, yet refusing to step to one side or the other of the aisle so that I could proceed. Their looks were not inquisitive in nature but degrading and repulsed. At about sixteen years of age, the four of them had the developmental skills to comprehend the fact that people have disabilities but apparently were lacking the social learning as to how to interact with people who were not just like them. My patience does not extend to ignorance, and so I offered them a simple choice: move or I will see just how many of them I can take out in one good roll down the aisle in wheelchair bowling. Apparently this made sense to them as they grumbled and shot dirty looks at me, but did rapidly discover that it is possible to walk without occupying the entire width of a store aisle. I do wonder if their little necks are sore from trying to stare at me behind them as they walked? :)
Three different ages, three different interactions, three different perspectives of me as a young adult who uses a wheelchair within the course of one day. Each one left me laughing, in a very different and unique way. Laughing at the innocence of a toddler, at the perplexed struggle to comprehend written on the face of a preschooler, and at the ignorant egocentric behavior of teenagers. Laughing at what it means to be human.
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Job 8:21

"He will fill your mouth with laughter and your lips with shouts of joy."



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Wild Olive

Wild Olive

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Creative Victory

This is Me

I am a thirty year old enigma who has defied every expectation ever placed upon me and refused every definition created for me. My greatest passion in life is to make a difference in the lives of children with special needs and their families. As a special education teacher I broke all of the unwritten rules to make sure that my kids received the services they needed and had a right to receive. I have never been so proud to be reprimanded before in my life. Now, due to unpredictable twists in life, I am learning first hand what life is like when you rely upon a wheelchair for mobility. I am a medical puzzle with the pieces slowly being identified and put together, and my medical bills alone could fund a small nation. It takes a village to keep me alive. :) However, I am not defined by the genetic misspellings. I am a teacher, a daughter, an aunt, a friend, a dreamer, a reader, an amateur photographer, a writer, an advocate, a star gazer, a world changer. I am stubborn, situationally shy, quick to use humor and wit to make others laugh or cope with a situation, sarcastic, fiercely independent, giving, compassionate (sometimes to a fault), protective of those I love, defiant of arbitrary boundaries, perfectionistic, self conscious, self assured (yes you can be both!), articulate and occasionally dramatic. And that is just what I could fit in two sentences! :)

Who's On First, What's On Second, I Don't Know! (Third Base!!)*

Simple Vocabulary Definitions for those who may not speak fluent medical :)

Undiagnosed Progressive Neurological Disorder- This is the diagnosis that is believed to make everything else fit together. It explains my frequent infections, my muscle weakness and dystonia, my dysautonomia, my cardiac issues, my inability to regulate blood pressure, my dysphagia, my ataxia, my severe fatigue, my extreme nausea, my gastrointestinal dysmotility and IBS like syndrome, my unbelievable migraines, my sensory changes in my arms and legs, my vision issues, my hearing loss (so much for blaming medication), and so much more. Going back to infancy and childhood, this would explain the severe apnea, the significantly delayed motor skills, the reason why I could never keep up with my peers in physical activities, the neurogenic bladder, the malfunctioning thyroid, and my frequent illnesses and vomiting. This is the diagnosis now being used since the DNA testing for Mitochondrial Disease came back odd and I can not afford the expenses of a workup at the Mayo Clinic. We are treating symptomatically.

Pan-Dysautonomia- "Pan" means that it impacts many different systems of my body, "dysautonomia" is a failure of my autonomic nervous system or the part of my brain that does all of the automatic things that do not require conscious thought like telling your heart to beat, regulating your blood pressure, adjusting your body temperature, maintaining balance in space, digesting food, hunger and thirst, etc. It is believed that I have had this from birth based upon my history of symptoms, including severe life threatening apnea as an infant, but the cause remains elusive at this time

Dystonia- abnormal muscle tone and spasticity, including painful spasms, that primarily impacts my feet and lower legs and is now starting to be a problem in my back

Ataxia- difficulty maintaining balance and coordinating/executing movements

Dysphagia- difficulty swallowing due to any number of causes including muscle weakness and poor muscle coordination

Adipsia- the absence of a sense of thirst



Other Medical Issues- Lupus Anticoagulant (autoimmune disease that causes me to tend to form blood clots and has already caused two deep vein blood clots and one mild stroke), Migraines, unknown connective tissue disorder, abnormal gastric motility, allergies, history of v-tach and severe sinus tachycardia, changes to my echocardiagram that include leaking valves and a new murmur, low blood pressure, ataxia, untreated PFO (small hole in my heart that increases the risk of stroke), chronic lymphadema in my left arm, Hashimoto's Thyroiditis, Narcolepsy/Idiopathic CNS Hypersomnolance (believed to be a result of the dysautonomia and my brain's inability to regulate the sleep/wake cycle), mild hearing loss, malformed optic nerves, polycystic ovarian syndrome, pernicious anemia, vitamin deficiencies


* Title comes from an old Abbot and Costello routine that I chose to memorize in 6th grade and absolutely love.

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